Home pt. with glioblastoma. Could use some tips.

She's 65 with no other comorbidities. I fully expect this to be a challenging case, not to mention emotional. In the ICU setting, I would manage this with propophol, IV dex, cooling blankets, dilantin, ICP monitors, basal temp probes, etc. Without all the bells and whistles and only PO decadron, a seizure pack and a comfort pack and some knowledge packed away about increased ICP, I feel kind of naked.

She already has focal involvement with left sided hemiparesis and her level of consciousness is obtunded to lethargic to obtunded. She was diagnosed 2 months ago with grade IV primary glio. If any of you have any experience in the hospice setting with this nasty brain cancer, please share. The family needs everything I can muster with this one.

Hi RNK...it may be too late for the patient you described but if not I thought I'd share my experience. I've cared for many glioblastoma pts in the home hospice setting. An obtunded pt is usually fairly close to entering the actively dying phase...I'm assuming no IV or CVCs. I would make sure you have Decadron suppositories made and on hand for when she can no longer swallow. I don't know what's in the seizure pack but I'd recommend having on something to PREVENT seizures as well...ie Dilantin suppositories. It depends on the family's /caregiver's comfort re giving routine suppositories. Also, don't forget the routine comfort pack stuff...liq morphine, Ativan, Tylenol & Compazine supp.
I've also had youngish glioblastoma pts become very combative as they decline. Some drs don't like to order but I've had great success with thorazine. It can be administered as a transdermal gel as well as rectally (& po of course).
Hope this helps.

Aug 2, '07

Thanks for the advice. HP didn't tell me that decadron came in suppositories although they did tell me it comes in a gel which isn't very easy to accurately dose. I'll check into the suppositories. Our hospice isn't crazy about labs and dilantin would require levels. I've recommended Keppra but inexperience with the drug and the expense makes it impractical. This is a very poor household. I'm not sure if it comes any way except IV. I know the manufacturer was working on a PO version about a year ago.

She was obtunded a couple of days ago. Today she was eating bites of danish and laughing at our HHA's jokes. Rollercoaster.

Aug 2, '07

I've had a few glios, never did have a problem with seizures at the obtunded stage, but best be prepared. Decadron or Ativan injectibles are always handy. The glios I've had followed the path through as others, i.e. fever, secretions, respiratory distress, and vomiting. Pain wasn't an issue. Oxygen, suction, ativan, scopalamine, roxanol, tylenol, and compazine should see you through their journey. Best wishes and God Bless your care!

Aug 21, '07

I had an incredibly sad situation with a glio. pt/family. She was only 60. Her spouse was her soul mate. Her daughter, amazing.
The pt was a BEAUTIFUL woman robbed of her beauty by this disease which caused her head and face to swell. She developed petechia all over her legs/arms. She lost the ability to communicate. First she would search for words and say things like, "the cat hurts" when she wanted a drink of water. Then, she would get so angry that she couldn't communicate. She loved massage until closer to the end. Her skin became incredibly sensitive and caused severe pain to be touched. She responded very well to roxanol sublingually. She did have a few seizures near the end (small) so we began using lorazepam sublingual and that seemed to relax her very well. She was inct. near the end and we placed a foley catheter which she hated but family 'needed'.
It is SO hard to shift from knowing all the labs, signs etc to focusing on the pt and the sx.
This family was so incredible. The pt was one to always be outside. Then when she got worse (no ability to sit up d/t weakness and severe vertigo-managed with meclizine initially, scopolomaine later) the family moved a hospital bed by the living room window. Ever day a GOLDFINCH would come and peck on the window. So her soul mate decided to open the window and see if the bird would fly into a cage...it did. It sat by her bed and sang and they fed it and talked about the outside sunshine that had come to her side. Then one night, with her family all around her, they let the bird go free and told her to follow the bird home...she died within the hour. Even more bizzare...there was a goldfinch at the funeral home on the day of her sevice. Her spouse is crushed, grief beyond words over his loss.
We still see him for support.
GOOD LUCK.

I had an incredibly sad situation with a glio. pt/family. She was only 60. Her spouse was her soul mate. Her daughter, amazing.
The pt was a BEAUTIFUL woman robbed of her beauty by this disease which caused her head and face to swell. She developed petechia all over her legs/arms. She lost the ability to communicate. First she would search for words and say things like, "the cat hurts" when she wanted a drink of water. Then, she would get so angry that she couldn't communicate. She loved massage until closer to the end. Her skin became incredibly sensitive and caused severe pain to be touched. She responded very well to roxanol sublingually. She did have a few seizures near the end (small) so we began using lorazepam sublingual and that seemed to relax her very well. She was inct. near the end and we placed a foley catheter which she hated but family 'needed'.
It is SO hard to shift from knowing all the labs, signs etc to focusing on the pt and the sx.
This family was so incredible. The pt was one to always be outside. Then when she got worse (no ability to sit up d/t weakness and severe vertigo-managed with meclizine initially, scopolomaine later) the family moved a hospital bed by the living room window. Ever day a GOLDFINCH would come and peck on the window. So her soul mate decided to open the window and see if the bird would fly into a cage...it did. It sat by her bed and sang and they fed it and talked about the outside sunshine that had come to her side. Then one night, with her family all around her, they let the bird go free and told her to follow the bird home...she died within the hour. Even more bizzare...there was a goldfinch at the funeral home on the day of her sevice. Her spouse is crushed, grief beyond words over his loss.
We still see him for support.
GOOD LUCK.

WOW, thanks for sharing!

Mar 22, '08

yes- thank you!

Mar 22, '08

I would also add every patient is different. One woman I recall had numerous seizures during the last days of her life. She should have been home with hospice, instead she layed on a med surg/oncology floor. Pretty horrible as nurses were unable to be at her bedside except for rounds. Family was there, but they were shaken by the seizures that kept coming and coming even with medication.

Mar 22, '08

Ativan, Decodron supp, Dilantin, liquid Tylenol, and Roxanol are the meds I used for my last glio hospice patient. They seemed to work well, but my first glio pt. was VERY hard to manage pain. He would have a temp of 101+ and then chills. He was quite a heavy drinker in his day, and I believe that's why his pain was so hard to control.

My Dad was diagnosed in December with glioblastoma and went through 6 weeks of chemo and radiation. Two weeks after he finished, he went into CHF and passed away 3 days later. I told Mom that it was a blessing he went the way he did and didn't have to live and let the CA finish the job it had begun.

Apr 2, '08

It will be two years in June that my husband passed from an aggressive, left temporal GBM (inoperable). I agree with LPN, this CA is ravaging. My husband chose to starve himself rather than to eat and allow the tumor to kill him. In his teenage son's eyes, he died a hero--he kept his promise to his sons that he wouldn't let the GBM kill him--he chose starvation instead. It was one of the most trying times I have ever had as a hospice nurse--whether to start chemo and radiation--whether to try to fight the battle and maybe lose precious quality time. He decided to fight and I decided that I would support his decision--after 6 weeks of radiation and chemo--the tumor had grown!--EOL symptom control was horrific the last few hours--he was young and his heart wasn't ready to give up even though every other system was shutting down.
Yes---there are definitely things worse than death. Aggressive symptom control (or anticipation of such) is a key element of this CA process--be prepared for anything--seizures, temps, aggression, wide mood swings depending on where the tumor is pressing for the moment, etc. This CA is more prevalent in males of the 45-60 range so the psychosocial issues are usually intense--get your team on board early!
Although I would not ever wish this type of experience on anybody, I definitely got a look at "the other side" of the coin--what families have to go through with paperwork and disability and coordination of MD appointments and trying to work and having co-pays alone eat you alive for expensive nausea drugs---the guilt my husband went through for feeling like he was depleating our resources-the worry of "keeping it together" for my children. Supporting my husband's wishes although they necessarily wouldn't have been mine. The act of being the caregiver alone is exhausting. Again, althoug I miss him terribly, he gave me a wonderful gift that I will be able to pass to my patients and their families---the gift of empathy. He will ever be our hero.